TW: The 'real' me inside - I come with an SI warning

@Chasingsunsets

Haha so i just tried to draft a message reply in the page while referring to a copy of your post in my Notes app. And yeah, page refresh got me! Thankfully only 1 paragraph! Now I'm reverting back to my opposite method of draft in Notes and reading post on page.

Thank you for the update on PSW phased out on forum completely. I knew they had increased mod role and decreased PSW role earlier in year, but not ceased. Hopefully mods will be trained to engage in a similar authentic and compassionate way. Is Obsidian still around? I think they were a great example of a mod who felt same as a PSW. And there's no reason a mod cant also have lived-experience to draw from. I agree with the sentiments you shared, esp about communication during and about changes which i think is even more important in trauma-informed and neurodivergent practice where predicatability/stability can be even more important. However I do trust (or choose to believe) that the changes were necessary for the continued sustainability of having the forum (eg funding perhaps); that's how I help myself with it at least.

I looked up the Pacific Gaze. I love that hooked beak and those chest-stripes. As you say - it does look fierce! And cute size :D . I don't think I'd want to be a mouse near it though.

One thing I have been trying to do more the past two months is be in nature more, as I now (post-treatment) find sitting in the bush watching/listening to birds (and any other animals) and/or a stream to be pleasant - and calming to my nervous system. Its been hard to do this the past month with my fatigue and being busy, so I try to lay outside at home when not too hot, cold or noisy. Its not so much seeing the bush as the animals. I guess I've always been drawn to animals, although not a single animal that I've been obsessed. But I've always been a "big dog person" if compared to small dogs or cats - but I do like all unless they're slobbery or wet.

My dogs. I saw them a week ago for a few hours and they were well. They are fulltime with my ex the past few months since I got worse and wasn't coping with them. I still get photos and videos sometimes, and I can of course ask for updates if I want or to see them, and if I want to take them for a night or outing I'm sure my ex would be very happy for me to. I had them for one night a few weeks ago when he had to go out of town. Haha I had forgotten about her stealing those cupcakes! That was funny - thank you for reminding me. Last steal I heard of was a while ago; she stole the joint-powder made from seafood for the other dog - very tasty, and expensive.

How are yours?

Liz is a rollercoaster-friend. We will see if she remains a friend or not. Dexter might be a better friendship; I've met him a few times and it seemed to be OK. Or maybe both friends.

Thinks are better between my mum and I more recently. I'm not sure fully the change, but I am learning to ask for help or company when I need it and just hoping she says no when she wants to (and I think she is getting better at this too with me?). If I try to talk about what is causing me stress/overwhelm/anxiety she still sometimes goes into "problem solving" which causes escalation for me because its usually what I've already tried and isnt working, and she doesn't understand the executive-function-overwhelm I've been getting because it isn't logical. But I did have a verbal-physical meltdown reaction in conversation with her this week; maybe that will help her realise the intensity of the internal overwhelm that I'm usually holding hidden. It was only a 30-sec meltdown, and I felt a bit better after (i guess let out my nervous system response?).

I am trying to practice ways to physically release the nervous system activation, which is hard i am not yet comfortable with body-movement - but I'm starting small with my hands and legs.

I would be happy to chat about nervous system & window of tolerance, etc. I know a little bit - mostly this year - from both forum and counsellor.

Previously I thought I only sometimes went into shutdown/collapse, but post-treatment I can see that my system has been in shutdown/collapse for decades and just that during extra-overwhelm it was perhaps an added emotional dissociation. My counsellor had told me back in July that coming out of collapse requires going through the over-active experiencing stage before getting back to normal. I didn't experientially understand that at the time, but it makes sense to me now. I can only suspect that the type of increased nervous-system-reactivity I am currently experiencing even just from sudden noise or angry voices (not directed at me) is similar to how ptsd activations feel (just without the thought-flashbacks). I think my depression-shutdown may have been part of why my cptsd didn't feature problematic anxiety (i could control with cbt).

I don't know how long it will take for my system to settle or what I can do to quicken this process. But I do know that stress, fatigue and the meds-rollercoaster exacerbate it, so I am trying to reduce my stress/pressure (asking for help, reducing commitments) and fatigue as much as I can.

I wish we could be more open/explicit about the treatments too. I find them fascinating and also really helpful to know what has helped others and in what ways. Doesn't mean it will be the same for everyone - something I found with my treatment was that how my experience/effect was is different to what I had learned/expected - but not in a bad way. But I've since learned that what I experienced is also the case for some people and even for one person it may be sometimes one way and another time different too. If I do it again I guess I'll find out if I experience differently next time? (I had a severe side effect which I think impacted how i experienced it, but it can be treated next time as a precaution.)

An expensive treatment that is on the PBS was also suggested to me, but isnt the one I've just had. But it was suggested for me whilst awaiting this treatment - but there wasn't enough time to do a full course between, plus the cost as it isn't covered even as an inpatient. If not for the cost I would consider it though. There is usually ongoing maintenance doses for it after the initial course, but frequency and duration is variable based on the person - eg weekly, monthly... for months, years... but i like the idea that you can adjust it based on how you are at the time and it is immediate relief.

My one was a single-dose, but is often recommended to be in a 3-dose cycle. The research was looking at the effectivity and lasting-duration based on how many doses people have. Mine was the depression treatment, not the ptsd treatment.

I think we can talk about treatments as long as we don't mention specific name of med or advise to do or not do them? (Which of course is something for the discussions with a doctor!)

In my previous chats with Jynx we discussed the science of how these type of meds work and alter neural network and subconscious voice.

@Flutterbug9

"When people say or write “talk later” etc I struggle with the when aspect ie today, tomorrow, next week etc."

Absolutely! And in hindsight this year I've come to realise that whilst I take those phrases literally, often the other person doesn't mean it that way - with "later" just being a general polite thing. Gets me when a certain friend of mine would say "chat tomorrow"; I now know it's not at all literally tomorrow when they (specifically) say it - which of course doesn't apply with some other friends who do mean it literally as it's a specific timeframe! Ugh it can be so confusing eh.

I think 1 (or 2) weeks is a reasonable timeframe to expect a response from a business in, quite reasonable expectation on your part. Especially since emails can go astray (lost in server transmission, overlooked, spam inbox...) as we have no way to know unless they acknowledge it or we chase up. I have my fingers crossed that you hear back soon.

I'm glad you can do your cross-stitching again when you feel up to it. Is there a specific picture/theme of one you have currently in-progress?

Glad you have the next of the pain-med-infusions booked in. I know its a few months still, but hopefully something to hold onto.

I have run out of time and have to go - but want to read and reply to the rest of your post when able. Trying to fit in posts around my schedule and fatigue.

@Flutterbug9

I found reading about autism and adhd examples from others helped me realise things I do that I didnt realise were "traits" rather than "everyone", especially with the different strategies I use to compensate for it which is why people didn't notice/realise that I had difficulty with those things.

Interesting if GPs can do diagnosis in NSW, not just screeners. That would be great. I see no reason they shouldn't be able to, if they have done the appropriate training. I am surprised it would only cost a few hundred out of pocket though; but if a doctor is somehow billing it through Medicare and doing it over a series of 1 hour appointments that's possible. And if there isn't the need for a written report - as that usually is half the cost. My AuDHD assessment was 5 hours (4 hours was normal) face-to-face assessment time - most of it for autism component. I think adhd can be 1 hour? Or maybe because they also observe the current adhd traits during the autism assessment! This is just me musing.

Re: memories. I have patchy memory of early childhood and even some of the details of my teenage life experience are becoming hazy. I don't know if my lack of memory of early childhood is trauma or neurodivergence. Apparently memories can be endoded differently in ND's and its not uncommon to have an absence or difference in them. I have recently been thinking sometimes that i'd like to remember what young childhood was like for me inside; I guess I am curious. I know there would be some pain and confusion - esp around the trauma and if I had more memories surface - but I suspect back then I could still also feel excitement and playfulness too. I wonder whether I felt confused/puzzled by how the world was, and if that is why I developed an interest in observing people and understanding how others think and why they do actions.

Lovely that you enjoyed listing to the heavy rain. I do too.

Lol you and Chasing both asked about my mum and dogs. I will copy what I wrote for quick/ease!

My dogs. I saw them a week ago for a few hours and they were well. They are fulltime with my ex the past few months since I got worse and wasn't coping with them. I still get photos and videos sometimes, and I can of course ask for updates if I want or to see them, and if I want to take them for a night or outing I'm sure my ex would be very happy for me to. I had them for one night a few weeks ago when he had to go out of town.

Things are better between my mum and I more recently. I'm not sure fully the change, but I am learning to ask for help or company when I need it and just hoping she says no when she wants to (and I think she is getting better at this too with me?). If I try to talk about what is causing me stress/overwhelm/anxiety she still sometimes goes into "problem solving" which causes escalation for me because its usually what I've already tried and isnt working, and she doesn't understand the executive-function-overwhelm I've been getting because it isn't logical. But I did have a verbal-physical meltdown reaction in conversation with her this week; maybe that will help her realise the intensity of the internal overwhelm that I'm usually holding hidden. It was only a 30-sec meltdown, and I felt a bit better after (i guess let out my nervous system response?).

I think part of the reason its abit easier with my mum also is that she may be less anxious/stressed because i've been able to tell her that since the treatment I have agreed to give life a second chance. It makes it safe to talk to her when i am distressed, because the framing is the opposite and thus focused on "i need to get through this current stress and get to stability" - which is thinking she can encourage i guess and is less scary for her to know about.

Working from home became difficult for me, so i now usually go into one of the offices on my second day also. However the office environments can also be over-stimulating and hard to have rest breaks to lay down if I need to, and thus difficult also. It had also been very difficult to work with my adhd unmedicated but so far that's improved i think since starting the medication.

Treatment was done as a one-off through the trial, although full-course recommendation for these treatments is 3 doses (3 weeks apart). We are seeing how things go, and will consider early next year if to do a second dose - benefits vs cost. If it was not so expensive I would definitely do it again as my instinct tells me it will help further. However the treatment isnt ever a daily/weekly/monthly type of thing. There is not guidance i know of around how often they would recommend for additional doses after the initial 3-dose set -- i don't think they know enough about how long it lasts for people yet, so I think its a per-patient assessment type of thing?

Please don’t feel you need to reply to me within any timeframe @AlwaysMyself I didn’t post to you in the gap where you were not on the forums, I was factoring in your return to work, appointments plus your health. I opted not to post to you as didn’t want to risk of feelings of being overwhelmed. Same thing still applies. Not long after you returned to work I walked away from the forums as I didn’t feel safe on the forums anymore following an email I received. Even now, I’m very careful what I say and to who.

some one I know uses the word “later”, can be weeks at times before I get any reply. Totally unpredictable and, at times, frustrating. Worse when I’m not in a good headspace. This is the type of “later” that I really struggle with.

I decided on 2 weeks for psychology group so they can’t say they weren’t given enough time to respond. My 2nd email is already sitting in draft and includes request for acknowledgment of receipt of the email. Honestly, admin staff member should be able to do (one hopes).

Ive tried doing different types of self care/hobbies but finding I’m loosing interest in them quickly. I enjoyed doing 500 piece jigsaw. Currently have the edge pieces for another jigsaw on the jigsaw table and don’t want to do anymore of it, been that way for about month by now. Spent about hr recently reading and thoroughly enjoyed it (didn’t want to put the book down but needed to as it was late and my evening meds were kicking in). 2 chapters to go and the book has sat untouched for days now.

cross stitch I’m currently working on is of kittens asleep in a basket, it is quite long and not very high. At the moment thinking of taking much small cross stitch into hospital, that one is canaries and wooden birds nest in shape of a house. Can post pictures, if you would like. I’m trying to break the situation of starting something, getting bored, buying something new and working on it until I get bored. Have no idea how long ago I started doing that, definitely a long, long time ago.

I know what you mean regarding autism and adhd traits and having come up with ways to adjust to them.

that’s great hearing about you and your mum. Hearing about the differences in focus of conversations. I guessing atmosphere has improved also. All takes time and is amazing the difference even small things can make. Sorry for asking things someone else has already asked, I’ll be more careful from here on

I can semi understand any uncertainty regarding possible future treatments in regards to outcomes being different from person to person. With every procedure I receive via the pain management group I’m issued with a diary to complete which is discussed as part of post procedure review appointment. With each procedure I’m fully aware the benefit can be different each time. Review appointment within next couple weeks, wanting to discuss issue that arose in theatre (I came out of the anaesthetic whilst still laying face down on surgical table and was in lot of pain).

Few things that are different with this new software @AlwaysMyself

• posts no longer save as draft
• notifications to email were turned off for everyone
• can only see posts if tagged in them or know where to search for them
• access to other people’s profile were turned off for everyone

I remember getting an email with info about why, can’t remember now the reason/s

I went to my 2nd macrame class this afternoon and completed the first step of a floral wall hanging. I’ve seen online a few macrame cats head design wall hangings that have grabbed my attention (who know how long the attention and interest will stay) that I’m hoping to do, need to buy the online instructions when I’m ready.

I’ve known for long time I blocked out memories of my teenage years and early 20’s due to trauma. Bits I did remember I wished I didn’t with, at times, feeling like I was watching a horror film based on my life. During the last couple of years I’ve started getting snippets of my life from when I was early primary school. Ask me what I did or ate couple days ago and I’ve got no idea 😆😆

do you find you loose time? Eg It can be 4pm one moment and somehow, all of a sudden it can be 7pm and I haven’t done much (haven’t been asleep either. 🤭)

@Flutterbug9

I hope my message(s) didn't come across as though I was interpreting any lack of message whilst I was away as a negative or 'lack of care' perceived - it's not. I know you were respecting to give me space if I needed it and that's equally as meaningful to me as someone reaching out to check in. I experience inner conflict around whether to reach out to people who I haven't heard from, or whether to not as it may be a sign they need to withdraw (which I want to respect). I find it so hard to know unless I've known the person very well and seen or discussed these patterns with them previously.

And I don't mind at all that you asked the same question as someone else. My comment was more just that I was acknowledging that I was being "lazy" (efficient?) by copying and pasting the text, and not trying to "hide" that (in case people might get offended that I didn't rewrite it personally for them? I don't know if this is a thing, but i feel like i've seen people in my life sometimes have reactions to people doing something practical that they felt was impersonal? I dunno - social rules i may miss?? Lol. I'm prone to over-thinking them I guess! And never want to upset people where avoidable.)

I find it hard to sustain motivation for recreation also. I am mostly socially-driven, and also like learning. But once i've "learned" how to do something the novelty might wear off (my adhd trait) and I may only keep doing it if I do it socially with someone. However I also dont like not finishing things (my autistic trait?) so sometimes I force myself to do more of it (which i then don't enjoy and resent) - which is OK for a small project but for something that takes many hours this is not good for me. But social body-doubling might help me with this to get some projects completed, but currently I don't have the time to schedule this - but I've heard from people here and other friends about online platforms for this which maybe I can look into next year.

If you'd like to share a photo of your cross-stitch I'd enjoy to see it, but if it feels like effort to photo & upload I don't want to add burdon/pressure/expectation.

Re: surgical theatre incident - was that due to waking up / coming off the anaesthetic earlier than anticipated? Or their "normal"?

Sorry I don't know too much about what is normal for surgery - hence my question.

Is that experience something you'd like to talk about? I'm not sure how that would feel for you, other than of course painful! I can imagine i might also feel scared or confused, being face-down.

Either way though, I am glad you plan to raise it at your Review appointment and support you in doing so. I'm learning this year to be able to tell my doctors when something wasn't ideal - even if I "coped" with it. And I've had positive experience with them wanting to know and considering what can be adjusted or at the very least being aware and sensitive to the additional challenge for me. It's helped me feel safe and build trust with them, so gradually felt more able to do it on less-severe issues too. I failed to do this *during* my psych-treatment-dosage with an acute side-effect, and only told them about it *after* the acuteness reduced to a milder level; I don't want to make that mistake again next time.

Time for me to leave for the day. Hoping my fatigue is not as bad as yesterday, and that the new plan for treating my meds-crash will work today. Yesterday I didnt feel well and its hard to know what was meds-accentuated or not.

@AlwaysMyself intention behind my mention of having been giving you space was about replying to each other. Sorry if I caused confusion. With other online chats, people aren’t always ok about copy/paste something they have already mentioned within the same chat.

I struggle when comes to starting things, especially housework. Due to not having been getting much help from psychologist, I started doing my own research for things to help myself. I stumbled onto ACT Matrix through which I set timer for 5 mins, most times the target has been reached which means I take a break and do something else for awhile prior to starting timer again. I’ve read that body-doubling can be very helpful, not an option I can consider.

social settings are out of my “comfort zone”, even involving outing to somewhere I know I’d really like to go to. My previous psychologist tried telling me it was something I could control and that I needed to make myself go. Psychologist I was seeing this year described it as Autism Social Avoidance. I’ve got used to social setting each Thursday evening and enjoy the game. Even after months of going I still need to psych myself up to get there, arrive few minutes before game due to start and I’ve got to get out of there as soon as game is finished. (Yesterday I lost couple of hours with dinner partly cooked when I should have been leaving my place)

im happy to take couple of photos and will post them sometime prior to Sunday night.

@AlwaysMyself, please don’t hesitate to ask me anything you want to. If it’s something I’m not ok talking about I will let you know. In general, it’s a challenge for me to advocate for myself with anyone my mind views as in authority, psychologists and psychiatrists being 2 such roles. My mind doesn’t view my pain management dr that way which has allowed me to feel comfortable talking with her about lots of things.

(apologies in advance if you know any of the following). RFA procedures for me involves me laying face down in surgery as needles are injected in my back. Procedure starts with me getting as comfortable as possible prior to being given anaesthetic. First RFA I had I did wake up until I was in recovery ward and I had zero pain until I went to get off hospital bed in the hospital room (I always stay overnight when I have RFA). This time I woke whilst still in theatre, remember being rolled onto my back onto the hospital bed. few people I’ve spoken with, 2 having been nurses, have mentioned amount of type of anaesthetic might not have been quite enough.

the anaesthesiologist that I had this last time is one I’ve had before and the one I prefer. His knowledge and way of explaining things, his tone, his humour have all helped me feel comfortable about being in his care and that I can trust him.

my morning has started on a positive note following phone conversation with RACV customer complaints team. I bought an electric scooter few months ago due to the status of my back. Firm I bought it from provided RACV with my name, member number and details of the scooter. I didn’t realise my membership was still in my maiden name. Staff member who received email from firm I bought the scooter from created a new member record using my name and ignored my member number. Fixed up the surname at local branch in person and was given impression everything had been fixed. Staff member this morning explained details from the duplicate membership need to be merged onto my correct membership which can take months. Until merged I have to carry 2 membership cards.

Im hoping that today runs lot smoother than yesterday for you. After you are on the right dosage of adhd meds, will the crashes stop or, at least, ease or are the crashes more fatigue related than adhd?

im feeling happy and pleased with myself today. Few years ago I bought a new phone, back of which is mauve. Tried to buy a case of similar colour, couldnt buy one locally and still can’t. I bought a medium green case at the time as I like to design on the outside of the case. Yesterday the mauve case I ordered 2days prior from Amazon arrived.

i better get some more laundry done and put some clean laundry away. Only downside of having OCD colour trait is time it takes to deal with laundry, linen cupboard and wardrobe.

Thought best to do this whilst I remember @AlwaysMyself Instructions for the kittens in basket take up 10 A4 size pages and are slightly bigger than the actual piece. Shows how good my memory is, it’s actually a bird feeder with the birds 😳🫣. Prior to the rotator cuff tears I was working on the kitten cross stitch for approx 3hrs most evenings. I’m now doing about 30mins couple of evenings a week.

@Flutterbug9

Occasionally I can become engrossed in a task and not notice the time fly by - that would happen with me on the forum here. Sometimes it can happen when I'm in good conversation with people too. Or sometimes when I'm lost in thought when resting. However I don't have the dissociative absence of time and no idea what i've just been doing thing. Although remembering what I did in prior days? Yeah, I can often forget what I thought or experienced unless something triggers the memory.

"Social avoidance" and "comfort zones"... I have mixed feelings on it, because I think it depends on the person, what they actually want, and whether or not its a "problem" for them. At times in the past I've experienced others try to tell me something is a "problem" but I don't feel it is having a negative impact for me and thus isn't my priority to address, whilst other things I am finding problematic and want to address can be dismissed as "not important". So from my experiences, my first question is "Is this what the person wants for themselves?" And if it is, then great - work on that goal.

Is going out to these social things something you want to do? Or just something you force yourself to do?

For me, socially, its a push-pull. I want to find more people I can do things with who don't feel draining to me. But finding people like that is rare for me, and the process of going to group things to meet new people is exhausting and I can end up feeling worse and more discouraged. And finding groups/activities that interest me to attend that don't cost money is hard also. Plus any commitment to attending is hard with my current schedule and health variability. It makes it all feel too stressful sometimes.

I'm glad you like the anaesthesiologist and feel comfortable and safe/trust with him. And the good relationship with the pain management doctor too. I'm really glad you have that, and I hope this can also develop with the psychiatrist for you also.

I have found it interesting reflecting myself on what actions or moments have been impactful for me on building trust with my doctors/supports this year.

I hope the ravc memberships can be merged without too much more hassle for you. Its frustrating when things that sound so simple take a long time or admin to have done.

The adhd med I take in the morning is definitely causing the massive fatigue-crash when it wears off at midday, and it seems to have reduced the severity of it a bit when I increased the dosage but still occurs to a debilitating degree. Now we have added a small additional dosage for when it ends, and it is helping to counter the fatigue-crash, but I still feel tired the rest of the day and can't do much other than sit and can't do anything stressful as I then get easily overwhelmed.

However I don't yet know how much of the fatigue i am feeling whilst on the top-up dose is due to the first-dose crash, or how much is due to other causes such as my prolonged stress and insomnia now trying to "catch up" once my nervous system is calmer (when on the meds). If this is the case, then maybe I will slowly feel less wiped out during the top-up dose time and evening. However if this doesn't happen, and its is just from the morning med dose crash-effect, I will need to discuss with the doc what we do -- there are a few options I am aware of.

I am struggling with managing this process in the interim, but just holding onto knowing that we will figure it out and things will improve in the future. Until then, I just have to try to plan to not have anything stressful or energy-using after lunchtime.

Lovely to hear you have a new phone case in the preferred colour choice now. Its nice how little things can be a mood-lift.

Love the 2 cross-stitches also. Beautiful.